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Health Data Research UK

By harnessing health and biomedical data in the UK, Health Data Research UK (HDR UK) will develop and apply cutting edge data science approaches in order to address the most pressing health research challenges facing the public. HDR UK is a joint investment led by the Medical Research Council (MRC), together with the National Institute for Health Research (England), the Chief Scientist Office (Scotland), Health and Care Research Wales, Health and Social Care Research and Development Division (Public Health Agency, Northern Ireland), the Engineering and Physical Sciences Research Council, the Economic and Social Research Council, the British Heart Foundation and Wellcome.

Find out more about Health Data Research UK .

Last updated: 31 March 2022

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New partnership creates innovative Masters programme in health data science

27 May 2021

Health Data Research UK (HDR UK) and Cambridge Spark partnership creates new learning and development opportunity to power up careers in health data science

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HDR UK and Cambridge Spark are today announcing a new partnership to build data science and Artificial Intelligence (AI) capability in the health sector. Working together, they will provide the AI Apprenticeship Academy for Health’s – offering organisations in the health sector a work-based route for upskilling staff with a masters-equivalent qualification in AI.

The programme will combine Cambridge Spark’s expertise as a data science education technology company with HDR UK’s expertise as the UKs national institute for health data science. The programme is fully funded by the apprenticeship levy and enrolment is now open for employers to join the first cohort starting in September 2021.

With the application of data science and AI in health, there is huge potential to better understand diseases, discover ways to prevent, treat and cure them and optimise the delivery of health systems and services. The UK has some of the richest health data in the world, making it possible to deliver national-scale improvements to health and care and lead the way in using data science and AI to produce better health outcomes for us all. To realise this ambition, organisations in the health sector are faced with a challenge to attract new talent and upskill their existing UK workforce – something this partnership will help solve.

The AI Apprenticeship Academy for Health offers organisations a solution to upskill existing and new staff to build their data and AI capabilities. As part of this unique programme, learners will use, secure, anonymised real-world health datasets in their studies, with access to expert health insights from HDR UK and the industry-leading data science and AI expertise of Cambridge Spark, including their proprietary cloud-based data science learning platform – EDUKATE.AI®.

The Academy is open to employees working in analytical roles who are familiar with programming in Python. During the 15 month programme, they will be equipped with the skillset to discover and devise new data-driven AI solutions, automate and optimise processes and support, augment and enhance human decision-making in health. Learners will build a portfolio of work-based projects during the programme, working with Cambridge Spark’s technical mentors to practically apply their new skills directly to their work.

Dr Raoul-Gabriel Urma, CEO and Founder of Cambridge Spark

“We are incredibly excited to be partnering with HDR UK to support the health sector in building their AI capabilities in the workforce. There are incredible untapped data opportunities within the health sector to improve patient outcomes and human health. Through our partnership with HDR UK we will empower health professionals to take advantage of these opportunities.”

Sarah Cadman, HDR UK Programme Director for Talent and Training

“Data science is becoming critically important for healthcare and we need to be sure that the right training and information is readily available for everyone from students to data engineers, analysts and scientists working in industry, academia or the NHS. “Working in partnership to develop new, high quality training programmes is a key part of HDR UK’s strategy to power up the UK’s health data science skills. So, we are delighted to be working with Cambridge Spark to provide this innovative Masters-level course, which is a perfect fit for our portfolio.”

To find out more, join our webinar “Building AI Capability in Health” on 16th June at 11am.

Register for the webinar here

About Health Data Research UK

HDR UK has a range of education and training options from short CPD-accredited videos to fully funded PhDs.

Health Data Research UK (HDR UK) is the national institute for health data science. Our mission is to unite the UK’s health data to enable discoveries that improve people’s lives. HDR UK is funded by UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities.

HDR UK was set up in 2018 to support research on health data at scale to advance our understanding of disease and enable new discoveries that will ultimately improve health and care. We have established national research programmes that use data at scale, and we are building an infrastructure to enable the responsible access and analysis of this data. Our work is structured around three themes:

• Uniting health data – which includes the UK Health Data Research Alliance and the Health Data Research Innovation Gateway.
• Improving health data – which includes tools, methods, Health Data Research Hubs and the BHF Data Science Centre.
• Using health data – which includes research discoveries and skills development across four national priority areas: Understanding the Causes of Disease, Clinical Trials, Public Health and Better Care.

We are delivering this strategy through our inclusive, team-oriented One Institute ethos – bringing together NHS, universities, research institutes and charities – built on our values.

Health Data Research UK welcomes new Board Member

25 April 2024

Health Data Research UK (HDR UK) announces changes to the Board including a warm welcome to a new trustee, Professor Junaid Bajwa.

New insights to tackle major global health data research challenges

24 April 2024

An analysis of the challenges faced by researchers during the International COVID-19 Data Alliance (ICODA) programme has shed new light on solutions that could accelerate global health data research.

Three new members join the UK Health Data Research Alliance to transform data for public benefit

22 April 2024

Today, we are delighted to announce that three more organisations have signed up to join the Alliance.

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UK Health Data Research Alliance

The UK Health Data Research Alliance (the 'Alliance') is an independent alliance of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale.

The Alliance is managed by Health Data Research UK (HDR UK) and funded as part of HDR UK’s 2023-2028 core work to accelerate the trustworthy use of health data for research.

It was previously supported by  UK Research and Innovation’s (UKRI) Industrial Strategy Challenge Fund (through the ‘Data to early diagnosis and precision medicine challenge’) as part of the Digital Innovation Hub (DIH) Programme .

The purpose of the Alliance

The Alliance aims to accelerate progress in health and care by encouraging widespread and responsible access to structured and unstructured clinical, administrative, imaging, genomic and other molecular data.

The UK has some of the richest health datasets world-wide. Some of these are well organised, but only a fraction of all NHS and research data is accessible for research and innovation. This makes it difficult for researchers and innovators realise the full potential and value from the data, slowing down the development of new treatments, innovation and progress towards a more efficient health and social care service.

By combining expertise and a shared commitment to health research collaboratively, we are helping researchers and innovators to answer some of the most difficult questions and address the most important health challenges faced in the UK.

View and download the Alliance the one-pager

How the Alliance works

Through the development and sharing of best practice, and by earning trust in health data use, the Alliance aims to maximise research potential and ensure it benefits as many people across the UK as possible – we achieve this by:

• Bringing together the research, clinical, and disease advocacy communities, patients and the public, and the private sector to support and promote the responsible sharing of health data for vital research and innovation.
• Collaborating to create a versatile platform that is open and accessible, and provides common standards and tools for stakeholders in the health data science community; and,
• Publishing a series of Green and White papers on key work areas for consultation, helping to shape developments and to create a responsible and ethical infrastructure for UK health research and innovation.

Meet the Alliance team

A pioneering programme to establish a national infrastructure for health data science

12 September 2023

The Digital Innovation Hub Programme represents a defined period of funding but was delivered to support the advancement of a much wider agenda – to harness the power of UK health data for...

UK Health Data Research Alliance diversifies its membership to gain insights and drive innovation

17 July 2023

Following a review of UK Health Data Research Alliance membership by the Secretariat and Alliance members, the Alliance welcomes for the first time non-data custodian organisations including two...

UK Health Data Research Alliance calls for action to improve coding of ethnicity data

21 June 2023

In 2021, the UK Health Data Research Alliance established the Ethnicity Coding Working Group to tackle the challenges and explore opportunities in the use of data reporting ethnicity. Paola...

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Health Data Research UK joins public involvement pledge

A leading UK body for health data science has joined other health and social care organisations in a pledge to improve public involvement in research.

Health Data Research UK (HDR UK) joins the Health Research Authority and a host of other organisations to sign up to the Shared Commitment to Public Involvement in Health and Social Care Research. The Shared Commitment aims to bring about changes which will drive up standards in health and social care research.

The statement was developed in partnership with members of the public and was launched in March 2022 during Science Week (11 to 18 March).

It’s great to have HDR UK joining our Shared Commitment to Public Involvement. This shared statement, developed with patients, research participants and leaders in health and social care research, will ensure public involvement is embedded across the health and social care research system. The entire research system is sending the same strong message; that public involvement is always important, always expected and always possible. The evidence is that better research results from involvement, and better research delivers benefits for patients.

HDR UK’s mission is to unite the UK’s health data to enable discoveries that improve people’s lives.

As the UK’s national institute for health data research, we are in a privileged position to work with the public’s data. We, therefore, have a duty to ensure patients, carers, communities and the public are actively involved in decisions about how their data is used for research. Signing up to the Shared Commitment to improve public involvement in health research is an important step in building and scaling up active and meaningful patient and public involvement that ensures the diverse public influence and shape our work to deliver public benefit to all. This is a fantastic example of collective action in practice across health and social care research and we are looking forward to collaborating with the community to improve practice, deliver change and ensure the needs and experiences of patients and the public are the centre of our work.

The Shared Commitment builds on work led by the HRA in response to the reduction in public involvement seen in studies submitted for approval at the start of the COVID-19 pandemic.

Public involvement refers to the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community.

Data for Global Health and Society conference

In December 2022 the HRA and HDR UK will be coming together to host a free one day conference on global health data.

The Data for Global Health and Society conference will look at the use of data to advance medical knowledge and deliver improvements to people’s lives.

The event will hear from leading national and international figures from the health data sector, including Tim Ferris, National Director of Transformation at NHS England.

Dr Matt Westmore, HRA Chief Executive, said: 'We’re delighted to be working in partnership with HDR UK to deliver the Data for Global Health and Society conference. Health data is crucial for improving treatments and saving lives and it’s essential that it’s inclusive and accessible for all. The conference is a great opportunity to come together and share learnings from across the sector.'

The conference is a hybrid event and will be hosted in Birmingham on Wednesday 14 December .

To register for the Data for Global Health and Society conference visit the HDR UK website .

Shared Commitment partners:

The Academy of Medical Sciences

The Association of Medical Research Charities

The Association of the British Pharmaceutical Industry

Cancer Research UK

Health and Care Research Wales

Health and Social Care Northern Ireland

Health Research Authority

Health Data Research UK

Medicines and Healthcare products Regulatory Agency

National Coordinating Centre for Public Engagement

National Institute for Health Research

NIHR Applied Research Collaboration (ARC) North East and North Cumbria

NHS Research Scotland

Universities UK

UK Research and Innovation

Related links

• Putting people first - embedding public involvement in health and social care research
• Doomed tomatoes and sticky notes: if you want things to be different you have to do things differently - a blog by Leni Sivey
• My role in developing a shared commitment to public involvement - a blog by Roger Wilson, public contributor
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‘Our health data is about to flow more freely, like it or not’: big tech’s plans for the NHS

The government is about to award a £480m contract to build a vast new database of patient data. But if people don’t trust it, they’ll opt out – I know, because I felt I had to

L ast December, I had an abortion. Most unwanted pregnancies set a panic-timer ticking, but I was almost counting down the seconds until I had to catch a flight from London, where I live, to Texas, where I grew up, and where the provision of abortion care was recently made a felony . You bleed for a while after most abortions, and I was still bleeding when I boarded the plane home for Christmas.

Going to Texas so soon after the procedure made me consider where the record of my abortion – my health data – would end up. When I phoned an abortion clinic in late November to book an appointment, one of the first questions staff asked was: “May we share a record of your treatment with your GP?”

I hesitated. There’s nothing wrong, in principle, with this question, and a lot that’s right. It’s not just that a complete health record helps my GP treat me. My Texan parents, both scientists, taught me that sharing information with organisations like the NHS can help it plan services and research ways to improve care. I’ve joined clinical studies in the past.

But I also help run a legal campaign group, Foxglove, that takes action against the government and tech companies when they infringe people’s rights. In a series of cases about NHS data since the start of the pandemic, we have defended people’s right to a say about who sees their medical information. This work has exposed me to worrying details about how our medical data can be used, including the Home Office practice of tracking migrants using their health records.

NHS data is special. For decades the government has required GPs to store patients’ records in a standardised way : as well as longhand notes, every interaction with a GP is saved on a computer database in a simple, consistent code. The NHS may hold the richest set of population-wide, machine-readable health data in the world. Many see in that data a source of immense potential – and profit. Ernst & Young has valued NHS patient data at £9.6bn a year . It is particularly valuable to tech giants, who would like to get their hands on NHS datasets to build AI machine-learning systems.

As things stand today, I believe my local GP would safeguard the record of my abortion. By Christmas next year? I’m not so sure. It may no longer be up to them. The government is seeking to overhaul the way it handles every health record in England, and its plans have filled some healthcare workers with alarm.

There is clearly a need to make patient data more consistent and accessible across the NHS. At the moment, caregivers in one part of the NHS often can’t access the records of care their patients received elsewhere. Imagine you have had knee pain for years. Doctors want to operate. At various times you have seen your GP, and been to a hospital in south London, but the surgery is due to be carried out in a different borough. (This kind of thing happens all the time.) A doctor is trying to judge how risky your operation is, to decide if you can go to a health centre, where you might be seen sooner and released quicker, or must be sent to a hospital.

Because your health data is held in many places – at your GP and across various hospitals where you have been – there is not one complete picture of you as a patient they can use to check. Of course the clinician will ask about your health before the operation; but you may not remember, or even know, every detail that could affect how your surgery could go. If this data was better shared, they could create a clearer picture of your health. Without this information, their assessment of your risk for surgery is, at best, an educated guess.

This partial view of the patient is commonplace in the NHS, and it is one reason the government is trying to create a vast new NHS England database , known as the federated data platform (FDP). (Health data is managed nationally, so this system is England-only.) If data from the nation’s hospitals, GPs and social care were fed into a single system, accessible in one place to health service doctors and planners, it could potentially help planners by showing trends across regions, and the population as a whole. The contract to build and run the platform is worth a huge sum – £480m over five years – with the winning bidder expected to be announced any day.

Putting so much data under central control may increase efficiency – but it also risks failing because of poor consultation and low patient trust. Many would prefer that NHS England invested in its own capacity, instead of farming out to private enterprise. The frontrunner for the contract to run the FDP is the US tech firm Palantir , which has performed data analytics work for the US security services, border forces and police. If you don’t know Palantir, you may be familiar with the company’s chair, Peter Thiel, a tech billionaire and Trump supporter, who has funded anti-abortion candidates and invested in anti-birth-control startups . Contacted for this article, Palantir emphasised that it is “not in the business of mining data, nor do we sell or monetise it in any way. What we do is provide tools that help customers understand and organise the information that they hold.” NHS England said that it, not the platform, will control the patient data inside it. It also points to contractual safeguards “to prevent any supplier gaining a dominant role in NHS data management”.

Still, the FDP gives government a lot of power over health data – and it hasn’t always earned our trust. In 2019, the head of NHS England and other top health officials discussed nine “ commercial models ” for access to the nation’s health data with tech and drug executives. A bill currently going through parliament, the data protection and digital information bill, would significantly dilute some of the laws that protect patient privacy. Data protection law – including the EU 2018 General Data Protection Regulation (GDPR) and its UK equivalent – limits what can be done with sensitive data such as health records. We mostly associate GDPR with infuriating website pop-ups , but it is a useful safeguard. It was one of the reasons the abortion clinic needed my permission to share my medical record with anyone, including my own doctor.

One of the most important of the proposed changes is the move to redefine what counts as personal data. Through a process of “pseudonymisation”, the system can detach your name and other identifying details. But this process is imperfect and reversible – and patients consistently say they want control over how their health data is used. If the government amends or interprets data protection law to take this choice away from us, it is hard to see how patient confidentiality as we know it will still exist. Our health records are precious to us. We come to the doctor as supplicants. We share worry, fear, pain. Our ability to do so depends on trust, which itself depends on the guarantee of privacy.

After a summer of strikes over pay and conditions, everyone can see that the NHS urgently needs more resources. The NHS could use our data – with strict safeguards – to streamline clinical decision-making and take pressure off doctors and nurses. But the government’s weakening of data protection rules, set against its cosying up to tech industry, is worrying. In the US in 2021, Google won a deal to access patient records at more than 2,000 clinics to develop healthcare algorithms. Google, like Microsoft and IBM, seeks to access patient records at scale in order to train algorithms to develop apps or organise care. In this troubling scenario, my pain, and yours, may become training data for someone else’s AI.

All this lingered in my mind on the call with the abortion clinic.

“I asked, was it all right if we shared this record with your doctor?”

“I’m sorry, but no,” I said.

Having an abortion was the most isolating experience of my adult life. It taught me how stigma lingers over abortion even in the UK, where treatment is widely available. It also changed how I think about health data: not only mine, but that of my family in Texas, and of patients across the UK. It spurred me to reflect on what is at stake if these changes to patient data go ahead.

With the drive towards AI in healthcare (from triage to diagnosis to drug research), we in England face a choice: will we privilege care and the public sector, or profit? People in the UK treasure the sanctity of our health record – we want control over who sees it, when, and why. What will it mean when we no longer believe a conversation with an NHS doctor is private?

A s I was flicking through Twitter on the early morning train to the clinic, a promoted post I’d never seen before popped up. It was a jokey meme showing a contraceptive pill pack, with the line: “Take your magic pills ladies, you don’t want any Baby Jesuses for Christmas.” Living under surveillance capitalism makes you paranoid. I snapped a screenshot, sent it to two female friends on Signal, then panicked, deleted the picture and turned my phone off.

It was 8am when I sat down at the abortion clinic in Ealing, west London, where a range of women awaited their appointments. Some wore fur coats, others tracksuits and false eyelashes; a few had been crying. A middle-aged woman, who looked as if she was rushing out to her next meeting, just seemed very pissed off. The only man in the waiting room was a teenager who had come along with his girlfriend.

At first I thought my reluctance to share my abortion record had mainly to do with data. I later realised it also had to do with shame. A cloud hangs over abortion. There is a strong residual stereotype of the woman who aborts: someone young, a bit careless, who knows no better.

In the parallel system you enter in England to access abortion, the language reveals a world shadowed by female vulnerability and male violence. I could hear it when I phoned the clinic: “Are you alone?” “Are you safe?” “Please choose a password and a memorable number; we will only use these to contact you about your treatment.” The clinic never used the word “abortion” by text or email. All this signals that you have ventured to a space outside normal healthcare. Nobody hassled me outside the clinic that day, but I’ve seen the protesters with signs outside another London clinic.

Go for surgery, a friend at a party had whispered; the pills cause far more pain. I remembered lying on the bathroom floor a decade ago during a miscarriage, the weeks of bleeding and pain, and decided to investigate. At the clinic, a seasoned Danish nurse told me I needed an internal ultrasound to assess possible treatments. I asked how soon I could have the surgery. The nurse said there would be a wait, until just before I was due to go to Texas, where there would be no aftercare.

It was only then, when I was lying on the table and the nurse prodded my ovaries and my vagina, that the sobs came. I didn’t want another child. But bodies tend to hold on to the remnants of pregnancies, miscarriages and births; I remembered watching other ultrasounds: the child who developed and the child who did not. I lay on the shore of life and death and felt utterly alone.

The nurse told me it was early, about six weeks, and handed me a tissue. (Six weeks is the criminal threshold in Texas.) She had had this conversation thousands of times. “Were you hoping I wouldn’t see anything?” No, I blubbered, I am just tired. I didn’t mention my rage: at every Baptist or Lutheran or Methodist minister in the small town where I was raised, at Texas, at myself. It was clear the surgery would be too late, as I had to fly to the US. Before leaving the clinic I took the first lot of pills.

You may support abortion rights on principle, as I do. You may also, as I do, admit privately that you find its ethics ambiguous. Having an abortion taught me that a woman’s ability to sustain or end life is simultaneously an awful burden and an awful power. Mulling over the complexity of it all now seems like wallowing in a warm bath. When the reality appears, you are thrown in a cold river. The cells are dividing; a choice must be made. Swim on, or turn back? I felt the power and I hated and feared it, and I realised why so many men hate it too, and seek to control it.

In most of the UK, abortion is still technically a crime. The 1967 Abortion Act does not legalise abortion ; it excuses it if a doctor considers that pregnancy (before 24 weeks) poses a risk to the mental or physical health of the mother. (Northern Ireland is different, with abortion legal on demand to 12 weeks.) This teaches women that to access care they must construct a narrative that continuing the pregnancy would be damaging to mother or baby, or both.

Perhaps that’s why I didn’t want the clinic to share my data. Having reduced a complex experience into a just-so story once, I didn’t want that story to be fed into a mass data system that could, I worried, one day be shared with the health division of Google, or the German drug giant Merck, or some other company. I saw my abortion as my story, and not one from which I was keen to permit any corporation, however modestly, to profit.

You emerge from this ordeal with a story you guard fiercely. This doesn’t mean you don’t tell it to others: it means you want absolute authority to tell the story as and when you see fit. It was months before I told my Texan family about the abortion; in the service of a wider point, I am writing about it now.

In German legal language, this is “informational self-determination”, or informationelle Selbstbestimmung . This idea means something slightly different to me from privacy. Privacy connotes a turning away, a hiding. But I didn’t want to hide my abortion: I wanted agency over when the story was told. Real data protection means you deal with your record on your terms.

I n some places, the data trails we leave have become a way to criminalise us. Earlier this year, a heartrending photo from Nebraska showed a girl of 19 sobbing as she was escorted from court after being sentenced to 90 days in prison after having an abortion at the start of her third trimester. Police had obtained her Facebook messages with her mother about organising the pills. Her mother was given five years for procuring the pills and hiding the body.

In Texas, over Christmas lunch with my sister and her teenage daughter, I wondered what I would do if they needed help. On what platform could we speak safely? How could I send them information, or bootleg them pills? Texas, like most of the US, has no GDPR equivalent, meaning women have no real control over their data. This allows apps such as period trackers to share location and other data with the authorities when the law requires.

This summer, a British woman was sentenced to prison after her search history revealed that, during the pandemic, she had a late-stage abortion. A couple of phrases typed into Google – one was “I need to have an abortion but I’m past 24 weeks” – helped to convict her. (The sentence, which drew broad condemnation from MPs, doctors and feminist groups, was later suspended, but her criminal record stands.)

“The fundamental thing to understand about NHS England is that it is the government,” says Marcus Baw, a GP and IT specialist. By this he means that officials, not clinicians, will make many of the critical decisions about which data flows into the new NHS platform. These officials, not doctors, will interpret the law about who will have access to it, including other government departments. I have yet to see an official give a clear answer to this question: once a copy of my health data has gone into the central platform, who decides what happens to it? The answer will seriously affect the public’s trust in the scheme.

This is not a new problem. In 2013, NHS Digital was set up to develop and operate digital services for NHS England. Its first chair, Kingsley Manning, stepped down in 2016 because he said he got fed up with the Home Office demanding to see migrants’ health data, to check their location for border enforcement. This, understandably, deterred so many migrants from seeking care that the government had to run an information campaign during Covid to encourage people who had migrated to Britain to come for their jabs.

NHS Digital was also set up to protect patient data, with decisions about data-sharing theoretically insulated from central government control. It was abolished last year, in a move Manning described as a “retrograde step” with “the potential for undermining the relationship between clinicians and their patients”.

It is jarring to set these serious questions of patient trust against Rishi Sunak’s breezy promises, last November, about “using our new Brexit freedoms to create the most pro-innovation regulatory environment in the world in sectors like life sciences, financial services, artificial intelligence and data”. Palantir’s CEO, Alex Karp, has praised the UK’s “pragmatic but serious understanding of data protection”. He recently told the BBC: “If you’re a pharmaceutical company and you want to do research on a medicine, you’re going to be able to do things in the UK you would not be able to do easily in the continent.”

The winning bidder for the contract to run the federated data platform will soon be announced. The data protection and digital information bill, which weakens individual control over personal data, has had a second reading , a key step on its way to passing into law. In the name of progress, our health data is about to flow more freely, like it or not.

P alantir has spent years preparing the ground for its FDP bid. At the start of the pandemic, with the normal procurement rules suspended, Palantir was given a contract to build a national Covid-19 data store for the NHS for the nominal fee of £1, collecting vast sets of patient data to track the pandemic and, for example, create a list of vulnerable people who needed to shield at home. This data was used to distribute ventilators and manage the vaccine rollout. But the scale of the data collection caused alarm: one Whitehall observer described the level of sensitive patient data being swept into the Covid data store as “ unprecedented ”, and claimed there was insufficient regard to privacy and data protection. In December 2020, it was given a two-year, £23m contract to continue working on the project. That was renewed for another six months at a cost of £11.5m in January this year. Officials had promised to delete that data store when the pandemic was over – instead, Palantir is being paid £24.9m to migrate its data store to the new system. The procurement documents describe the purpose of the FDP as “to replace the Covid-19 datastore provided by Palantir”. If it’s anything like its predecessor, the central platform of the FDP will retain a copy of at least some patient data for all of England.

The rules of the FDP – the framework for handling patient records – are crucial. In particular, the public needs to know exactly which parts of their health record are being pooled or accessed nationally. Patients are also likely to ask what specific uses the FDP will be put to, and what may be bolted on later. (The procurement documents for the FDP explicitly say the purposes are set to expand.) Once the FDP is built and a permanent national flow of patient data is established, the main thing standing between that data and other uses is the health minister. There will be information governance advisers, and a watchdog, the national data guardian, but at this scale, these soft power checks and balances will be severely tested .

If the data protection and digital information bill passes, there will be even more reason to be concerned about the security of national health data. “Taken together, this bill maximises data and minimises governance of data fed to AIs,” says the privacy group medConfidential. Given Sunak’s stated enthusiasm for the use of AI in healthcare , the concern is that a senior official will later seek to open up the data for commercial purposes. Without clear, strong safeguards, more people will opt out, and the FDP may fail.

The NHS is a boneyard of failed data-centralisation programmes. The first version of a national IT structure for the NHS was proposed by Tony Blair’s government in 2002. The idea was to replace paper records with a single digital version accessible to patients and doctors. The National Programme for IT ran into serious problems with software, and an over-centralised delivery. It cost more than £12bn over 10 years, and it failed partly because the proposed scale of data-sharing was seen as “highly problematic”. In 2014, David Cameron’s government tried again, with a programme called care.data . Again unresolved questions about corporate access, particularly insurance companies, sparked an outcry, provoking more than a million people to opt out of sharing health records. The government eventually gave up and cancelled the programme in 2016. Five years later, the government launched another project, General Practice Data for Planning and Research, to pool the most detailed data the NHS has: GP records. Following an outcry over government plans to make health data available to private companies, there was another huge wave of opt-outs. In August 2021, the scheme was paused . (My organisation, Foxglove, was involved in a legal case that precipitated the freeze.)

This adds up to more than 20 years of health centralisation plans – costing billions – and all of it foundered on the shoals of patient trust. Every scandal over centralising patient data also tends to increase the numbers of people exercising their right to “ opt out ” of sharing.

Statistics for the national opt-out serve as a rough measure of patient trust. It’s not a good picture: the number of patients who have opted out has ballooned over the years to some 3.3 million . (More than a million of those were added during the row over GP records in 2021.)

Opting out is currently the only practical way to register disapproval with state health plans, but it’s a blunt instrument. If you don’t want to give Google access to healthcare records to develop its algorithms, for example, or support the tobacco firm Philip Morris to develop inhalers , you’re also refusing positive uses of health data – say, helping NHS wards to plan ahead for numbers of patients vulnerable to flu. The current rate of opt-out is “incredibly problematic”, warns Dr Jess Morley, a researcher at Oxford University who has worked on patient data systems, because it makes the dataset “more random” and damages the value of the health data to the NHS. But to get these 3.3 million people to opt back in, the state will have to persuade them of its intentions – and its competence.

Recent polling by YouGov that Foxglove organised for a report also suggests that if the FDP were to go ahead in a form that is both managed by and accessible to private companies, around 48% of the residual population of England who have not opted out will do so. Anything like that figure will be disastrous for the NHS, because it would make the data useless.

P alantir isn’t the only contender for the platform. A team at Oxford University developed an open-source system called openSafely to support researchers during the pandemic. The system was secure and transparent – every question the system is asked is logged, and all approved projects are published. But it seems no one asked openSafely to help set up the FDP. There were other bidders, from Oracle Cerner to IBM to a “best of British” consortium of small UK companies and universities – but it’s not clear any of them had a serious shot. By the time the procurement opened in January, Palantir had its feet under the NHS table.

Palantir seems an odd choice of partner for the NHS. Originally funded by the CIA’s venture capital arm, In-Q-Tel, its early corporate history mainly involves supporting mass surveillance and the wars in Iraq and Afghanistan. In 2021, Palantir’s CTO, Shyam Sankar, said he hoped to see “something that looks like Palantir inside of every missile, inside of every drone”. (The company notes its services are also used by Ukrainian armed forces to resist Russian aggression, and by the World Food Programme.) Palantir helped the US and UK’s digital spy agencies (NSA and GCHQ) manage mass surveillance programmes such as XKeyscore , a system that tracked millions of people online. In Los Angeles, the police have used Palantir to build a tool, Laser, that claimed it would “extract” suspected offenders from the community like “ tumors ,” until community organisers forced the LAPD to scrap it . Not once have I seen a senior British official publicly reflect on how this history may affect trust in public healthcare among, say, migrant groups, or Muslims.

Palantir’s values appear to sit uncomfortably with the NHS. In January this year, Thiel described Britons’ affection for the NHS as “ Stockholm syndrome ” and said the best thing to do would be to “rip the whole thing from the ground and start over”. The company quickly distanced itself from its chairman’s remarks, which they said he made as a private individual.

This summer Karp hosted Sunak at a baseball game in the US, one in a string of lobbying efforts over the past four years. In 2019, Palantir served watermelon cocktails to the then-chair of the NHS, and Palantir representatives joined a closed-door chat at Davos with the then trade secretary Liam Fox and other tech executives. Fox’s briefing notes for that meetings said: “We have a huge and as yet untapped resource through the UK’s single healthcare system … We aim to treble industry contract and R&D collaborative research in the NHS over 10 years, to nearly £1bn.” (Again, there’s no suggestion that Palantir was seeking to sell data – just that UK officials were courting it and others to help the UK make health data commercially available.)

Views of Palantir’s usefulness to NHS staff vary. One hospital, Chelsea & Westminster, says its operating platform, called Foundry, which they have been trialling since early 2022, has helped cut waiting lists by 28%. Other local trials of Palantir’s software were apparently less successful. An answer to a parliamentary question earlier this year said that of the pilots of Foundry software at local NHS hospitals, 11 had been paused or suspended. Some have resumed, but a spokesperson for Liverpool Heart & Chest hospital stated that it had stopped using Foundry because staff had decided “ it didn’t meet our needs ”. Other trusts said they had more pressing problems to fix, and at least one said they had no one who could manage the system. A more recent letter to the health and social care committee updated these figures to say there are now 36 trials underway at various stages of rollout, with three of those paused due to restart, and five still suspended.

Turning to Palantir for so much of England’s infrastructure and analysis exposes a deeper problem: our own lack of data science staff. The NHS badly needs data scientists to make it fit for the future. (Palantir has hired two of its senior people.) In February, it was reported that the NHS has more than 3,000 vacant tech roles . NHS data scientists have warned that Foundry is not “user friendly”, and that the cost is “ridiculous”.

What would a better future for NHS data look like? It would probably start more humbly, with broad democratic engagement. The government could ask the public how they would like their data managed. Who do you trust to handle it, who would you like to be able to use it, and under what conditions? Should the opt-outs be reformed to give you more choice?

With a £480m contract about to be awarded, and the DPDI bill trundling ahead, expect to see a pitched battle over these questions in the coming months. It is a battle the government seemingly hopes to avoid, as it so often has in the past, by dodging debate rather than meeting tricky questions head on. Most people want to see the NHS use data better. But they also care deeply about who is given the keys to the kingdom.

Every prior effort to centralise NHS data has failed; this chapter is yet to be written. We can still get it right, and win trust for a better solution. If we don’t, many patients will do as I did, and turn away.

This article was amended on 14 September 2023 to update the number of ongoing pilots of Foundry software.

• The long read
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• Peter Thiel

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The ICODA team led the delivery of the International COVID-19 Data Alliance on behalf of the Executive Leadership Team.  The team combined skills from diverse backgrounds to achieve its goals.

Andrew Morris

Trudie Lang

Neil Postlethwaite

Anne Wozencraft

Sarah Fullegar

Matthew Retford

Sally Boylan

Edel McNamara

Jonas Häggström

Professor Andrew Morris has been the inaugural Director of Health Data Research UK since August 2017. HDR UK is the national Institute for health data science, with its mission is to unite the UK’s health data to enable discoveries that improve people’s lives.  He is seconded from his position as Professor of Medicine, and Vice Principal of Data Science at the University of Edinburgh.

Andrew was Chief Scientist at the Scottish Government Health Directorate (2012-2017).  Andrew currently chairs the Scottish COVID 19 Advisory Group which supports and provide analysis to the Scottish Government and senior clinical advisors.

He has published over 330 original papers, attracted over £100 million in grant funding and was the principal investigator of several programme grants including the Wellcome Trust United Kingdom Case Control Collection for Type 2 Diabetes, Generation Scotland, and the Wellcome Trust funded Scottish Health Informatics Programme (SHIP).

Global Research Director at Health Data Research (HDR) Global and Professor of Global Health Research at the University of Oxford and Head of The Global Health Network

Trudie Lang is Professor of Global Health Research; Head of The Global Health Network and Senior Research Scientist in Tropical Medicine, Nuffield Department of Medicine. She has over 20 years’ experience in running clinical trials, including trials in the developing world, for the pharmaceutical industry, the World Health Organisation and in academia.

Trudie focuses on combating diseases of poverty through the generation of high-quality evidence. She has worked in industry, academia and UN organisations. With her team and partners, she works to drive better health outcomes in vulnerable communities by enabling local leadership and ground-up implementation of high-quality health research studies.

Within the University of Oxford, she devised and leads  The Global Health Network  which is a major international collaborative enterprise that sets out to improve health by improving research.

Neil Postlethwaite is Technology Director for the International COVID-19 Data Alliance and joined HDR UK in September of 2020.  He is responsible for ensuring successful product deliveries from all our technical alliance partners, including the Workbench, a trusted research environment that allows researchers to discover, access and analyse global datasets whilst respecting confidentiality and privacy.

Prior to joining HDR UK, Neil worked for 23 years at IBM where he held a variety of technical, management and executive positions, working across IBM’s Messaging and Integration middleware portfolio.  He has been responsible for deliveries of both IBM MQ and IBM Integration products across a myriad of platforms and release levels.  He was Director responsible for IBM’s acclaimed Watson Internet of Things Platform and worked extensively across the IoT ecosystem building strategic partnerships with silicon and device manufacturers and driving Open Standards.

Neil holds a degree in Electronic Engineering & Physics from Loughborough University.

Anne is Head of Partnerships at ICODA and is responsible for engagement with, and support for, the Alliance’s global partners. Prior to joining ICODA, she led the International Partnerships team at Cancer Research UK, where she developed the charity’s international strategy and expanded its partnerships in global research, policy and health.  Previously, Anne held a series of executive board roles at the British Council, the UK’s international cultural relations organisation, where she led global programmes in science, research and higher education, and was then acting Head of International Relations at Imperial College London.

Anne began her career as a research scientist and lecturer at King’s College London, specialising in the immunology of infectious diseases. She completed her PhD at the London School of Hygiene and Tropical Medicine and held a post-doctoral fellowship at Scripps Clinic, La Jolla.

Sarah Fullegar is the Communications Manager at ICODA.

Sarah joined HDR UK as an Executive Assistant in October 2020 and has over 15 years of experience working in the charity and not for profit sector.

Sarah holds a BA in Media with Cultural Studies from Southampton Solent University.

Matthew Retford is Technical Project Manager and Agile Scrum Master for the International COVID-19 Data Alliance (ICODA). He joined HDR UK in May of 2021 and is responsible for the technical delivery and oversight of ICODA programmes and work-streams.

Matthew brings 5+ years of experience in the Health-Tech sectors in the UK and Australia. Prior to joining HDR UK Matthew was Lead Product Manager at Cera, the largest home care provider in the UK. His work at Cera focussed on the collection and analysis of health and operational data.

Matthew holds a degree in Computer Science from The University of Newcastle, Australia.

Sally is Project Manager and Grants and Agreements Coordinator within the ICODA team and supports 5 of the 10 Grand Challenges ICODA pilot projects on a day to day basis.

Previously, Sally worked at the Association of Charitable Foundations as Programme Manager for their Stronger Foundations initiative, a programme of inquiry into excellent foundation practice which took place over an 18 month period and which produced 5 thematic reports on Strategy and Governance, Transparency and Engagement, Funding Practices, Diversity, Equity and Inclusion and Learning and Evaluation. Prior to joining ACF, Sally worked as a freelance funding consultant for a number of years. Earlier in her career Sally led the institutional fundraising team at ActionAid and spent 11 years working for what is now the National Lottery Community Fund, managing a portfolio of funding programmes, and latterly leading a business change programme.

Data Protection and  Information Governance  Lead – Global

Jonas is an experienced biostatistician with 20+ years of experience in the life science field.  Jonas is the Chair of ICODA Statistical Expert Group and VP of Global Health at Cytel.  In addition, he also serves as an expert statistical consultant to the Bill & Melinda Gates Foundation, and as an expert evaluator to the European Commissio.

Prior to joining Cytel Jonas has had positions in industry, academia, and non-profit organizations, and his previous appointments includes; Food and Agriculture Organization (UN organization), Genentech Inc, and AstraZenec.  At AstraZeneca Jonas was the Neuroscience Therapeutic Area Statistical Expert.  In that role Jonas lead and managed the department, provided input to drug development strategy and design across all phases, and was responsible for the statistical methodology.

In addition to our ICODA core team members, we were supported by and worked very closely with all of our extended team within Health Data Research (HDR) UK , our convenor.

Health Data Research UK is a registered charity no. 1194431 funded by UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities.

Executive Leadership Team

The Executive Leadership Team (ELT)  developed the strategic direction for ICODA and was accountable for the delivery of our core work.

The ELT was overseen by, and accountable to HDR UK and our funders.  Its work was also guided by advice from our Advisory Councils on Science and Strategy and on Ethics, and an expert group on Statistics.

The ELT brought together key stakeholders as well as members of our ICODA executive team:

• Andrew Morris (Chair) Director, Health Data Research UK
• Trudie Lang Global Research Director at Health Data Research UK, Professor of Global Health Research at the University of Oxford and Head of The Global Health Network
• Steve Kern Deputy Director, Quantitative Sciences; Global Health – Integrated Development, Bill and Melinda Gates Foundation
• David Sibbald CEO Aridhia Informatics
• N é vine Zariffa Principle and Founder, NMD Group LLC
• Aziz Sheikh Professor of Primary Care Research & Development and Director of the Usher Institute, University of Edinburgh
• Neil Postlethwaite Technical Director, ICODA
• Anne Wozencraft Director of Partnerships and Strategic operations, ICODA

David Sibbald

N é vine Zariffa

Aziz Sheikh

Steven E. Kern, PhD is Deputy Director of Quantitative Sciences at the Bill and Melinda Gates Foundation.  He leads a team of scientists focused on gaining insight from data coming from Gates Foundation investments to inform program strategies in global health.

The Quantitative Sciences group is focused on quantitative data analysis to support program strategies for therapeutic projects that the foundation funds.  This effort extends across all therapeutic areas in which the foundation is involved including maternal & child health, family planning, malaria, tuberculosis, neglected tropical diseases, HIV, and pandemic preparedness.  He and his team are strong advocates of making research data “always FAIR and sometimes OPEN” to improve the impact data can have towards the problem it was collected to address, and beyond.

Prior to this, he was Global Head of Pharmacology Modeling at Novartis Pharma AG based in Basel Switzerland where he led a team focused on providing model-based drug development support to therapeutics in many disease conditions across all stages of drug development.  He joined Novartis in 2010 from the University of Utah in Salt Lake City, Utah where he was Associate Professor of Pharmaceutics, Anesthesiology, and Bioengineering, and served as co-investigator for their NIH funded Pediatric Pharmacology Research Unit.

He has designed, conducted, and served as a principal investigator for clinical pharmacology studies that spanned the population from preterm infants to elderly adults

David is the CEO of Aridhia, which he founded with Professor Andrew Morris in 2008.  He is also the Co-Founder and Board member of Sumerian, an IT analytics company he founded in 2002 and was previously the Co-Founder, Chairman and CEO of Atlantech Technologies, a communications software company which he founded in 1992 and sold to Cisco Systems in March 2000.

David is the Founder and Trustee of the Kate MacAskill Foundation, a charitable organisation providing education, care and micro-enterprise funding for children and young adults in the developing world and is Chairman of the Johari Foundation. He has been awarded honorary doctorates from Glasgow University, Glasgow Caledonian University, the University of Paisley and the University of Strathclyde for services to Scottish science and philanthropy.  He is a Fellow of the Royal Society of Edinburgh, Scotland’s National Academy of Science and Letters.  In the 2010 New Year Honours List, David was awarded an OBE for charitable services in Scotland and overseas.

Névine Zariffa, MMath is a highly accomplished thought leader in the fields of biostatistics and data science with extensive experience across all phases of drug development.  Névine had a 25-year career in senior roles at GlaxoSmithKline and AstraZeneca where she also led the Enterprise Data & Analytics initiative. She has been a key contributor to development strategies for over 200 drug projects across oncology, cardiovascular, metabolic, respiratory, inflammation, and renal diseases.  She served as a  Board member of CDISC for 6 years, has been a reviewer for The Lancet and has over 30 peer reviewed publications to her name.  She is currently a strategic consultant to select healthcare clients, several scientific data consortia ( ICODA and ctMoniTR ) and to the FDA’s Office of the Commissioner on the application of real-world evidence to COVID-19.

Aziz is a member of the Executive Leadership Team of ICODA and leads Driver Project 2.

Aziz Sheikh is Professor of Primary Care Research & Development, Director of the Usher Institute and Dean of Data at the University of Edinburgh.  He is a clinical epidemiologist with substantive interests in health policy, health informatics and the quality and safety of health care.  Aziz is Editor-in-Chief of the International Journal of Quality in Health Care.  He is Director of the NIHR Global Respiratory Health Unit (RESPIRE), Director of the Health Data Research UK BREATHE Hub and co-Director of the NHS Digital Academy.

Aziz has been honoured with an OBE, fellowships from 9 learned societies and is the recipient of numerous national and international awards.

Scientific & Strategic Advisory Council

The Scientific & Strategic Advisory Council provided high-level advice to help us identify opportunities to tackle the COVID-19 pandemic, to deliver scientific impact and overcome the challenges of data sharing.

Aligned with ICODA’s commitment to transparency, the Scientific and Strategic Advisory Council’s Terms of Reference and meeting summaries are publicly available here .

"We are very fortunate to have the opportunity to design a platform for the global community of health researchers to generate better health outcomes for the world."

Agnes Binagwaho, MD, M(Ped), PhD

Co-Chair of Scientific Advisory Council;

Vice Chancellor, University of Global Health Equity;

Former Minister of Health of Rwanda;

Senior Lecturer on Global Health and Social Medicine, Harvard Medical School

"The Covid-19 pandemic presents our world a powerful opportunity … and responsibility … to share knowledge in real-time. Time must not be wasted because lives and livelihoods hang in the balance. ICODA has been created and dedicated to facilitating Partnership … Progress … that will derive Hope. We are stronger together. Our shared data will supercharge discovery that will save lives."

Martin J. Murphy, DMedSc, PhD, FASCO

Founding Chief Executive Officer, CEO Roundtable on Cancer

Founding CEO of Project Data Sphere, LLC, a non-profit enterprise devoted to cancer clinical trial data-transparency, data-sharing and data-analysis

Prof Agnes Binagwaho

Dr Martin J Murphy

Prof Frank Rockhold

Prof John Danesh

Prof Nicky Mulder

Prof Steve Webb

Prof Trudie Lang

Prof Wang Yu

Gail Stephens

Prof Liang Wannian

Professor Agnes Binagwaho co-chairs the Scientific & Strategic Advisory Council of the International  COVID-19 Data Alliance (ICODA).

Professor Agnes Binagwaho, MD, M(Ped), PhD is a Rwandan paediatrician who returned to Rwanda in July of 1996, two years after the 1994 Genocide Against the Tutsi.  Since then, she has provided clinical care in the public sector, served the Rwandan Health Sector (2001-2016) in high-level government positions, first as the Executive Secretary of Rwanda’s National AIDS Control Commission, then as Permanent Secretary of the Ministry of Health, and 5 years as Minister of Health. She co-founded the University of Global Health Equity (UGHE), an initiative of Partners In Health, which focuses on changing how health care is delivered around the world by training global health professionals who strive to deliver more equitable, quality health services for all.

Professor Binagwaho currently resides in Rwanda and is the Vice-Chancellor of the University of Global Health Equity.  She is specialised in emergency paediatrics, neonatology, and the treatment of HIV/AIDS. She completed her MD at the Université Libre de Bruxelles and her MA in Paediatrics at the Université de Bretagne Occidentale. She was also awarded an Honorary Doctor of Science from Dartmouth College and earned a Doctor of Philosophy from the University of Rwanda College of Medicine.

Professor Binagwaho currently serves as a Senior Advisor to the Director General of the World Health Organisation, and as a member of multiple Advisory Board and Board of Directors including the Rockefeller Foundation Board.  She is a member of a number of international working groups and task forces in global health for the United Nations and independent organizations and also sits on the Editorial Board of several scientific journals and serves on multiple scientific commissions.

Previously, she co-chaired the Millennium Development Goal Project Task Force on HIV/AIDS and Access to Essential Medicines for the Secretary-General of the United Nations under the leadership of Professor Jeffrey Sachs (MGGs). Professor Binagwaho also co-chaired the Joint Learning Initiative on Children and HIV/AIDS (JLICA) (2006–09) and founded the Rwandan Paediatric Society, chairing it until 2019. Since 2016, she has been a member of the American National Academy of Medicine and since 2017 a Fellow of the African Academy of Sciences.  In 2015, Professor Binagwaho received the annual Roux Prize and Ronald McDonald House Charities Award of Excellence.

She is currently a senior Lecturer in the Department of Global Health and Social Medicine at Harvard Medical School, a Professor of Paediatrics at UGHE, as well as an Adjunct Clinical Professor of Paediatrics at Dartmouth’s Geisel School of Medicine. Professor Binagwaho’s academic engagements include research in implementation sciences, research on human rights to health, health services delivery systems strengthening, HIV/AIDS, and paediatric care. She has published over 190 peer- reviewed articles.

Martin J Murphy, DMedSc, PhD, FASCO  co-chairs the Scientific & Strategic Advisory Council of the International COVID-19 Data Alliance (ICODA).

Martin J Murphy ,  was Founding CEO and Board Director of the 20-year-old non-profit CEO Roundtable on Cancer at the request of the 41 st President George H.W. Bush. Marty was also Founding CEO of Project Data Sphere ®, a non-profit initiative of the CEO Roundtable devoted to cancer clinical trial data-sharing and analysis.  He is Founding Chief Executive Officer of the non-profit Shanghai TuoXin Health Promotion Center that has expanded its purview from cancer prevention and improving cancer patient outcomes to include international Covid-19 interventions and global pandemic preparedness.

Founding Executive Editor of the 26-year-old peer-reviewed journal, The Oncologist , Marty is also Founding Editor of Stem Cells , the 39-year-old flagship journal of stem cell biology, and Co-Founder of its 10-year-old sister journal, Stem Cells Translational Medicine reporting on stem cells in clinical trials.  In 2021 he became Director Emeritus of the CEO Roundtable on Cancer .

An NIH principal investigator, Marty has authored more than 180 primary peer-accepted papers and 7 books, is co-founder of Society for Translational Oncology , member of six Scientific Advisory Boards, two corporate boards of directors, Chairman Emeritus of Conquer Cancer—ASCO Foundation , and Steering Member of Chinese Society of Clinical Oncology . He is an Emeritus Member of National Cancer Policy Forum of National Academy of Medicine ( US National Academy of Sciences), board member of Center for Public Health Advisory Board of the Milken Institute, Director Emeritus of Foundation for NIH , Fellow of American Society of Clinical Oncology , and former vice chairman of C-Change . Marty is married to Ann Murphy, PhD, president and founder of AlphaMed Press and co-founder and executive director of Society for Translational Oncology . They have five adult children and ten grandchildren.

Professor Frank Rockhold is a Professor of Biostatistics and Bioinformatics at Duke University Medical Centre, Affiliate Professor of Biostatistics at Virginia Commonwealth University, and Managing Partner of HunterRockhold, Inc. He has diverse research interests and consulting experience including trial design, data monitoring, benefit/risk, and pharmacovigilance and has been a leader in the scientific community in promoting data disclosure and transparency in clinical research. His career includes senior management positions in industry, most recently as Chief Safety Officer for GSK.  Dr Rockhold served as Chairman of CDISC and president of the Society for Clinical Trials. He also served on the initial PCORI Advisory Board and is currently on the boards of the Frontier Science Foundation and an advisor to EMA.

Frank holds a BA in Statistics from The University of Connecticut, an ScM in Biostatistics from The Johns Hopkins University, and a PhD in Biostatistics from the Medical College of Virginia at Virginia Commonwealth University. He is an Elected Fellow of both the American Statistical Association, the Society for Clinical Trials, and the Royal Statistical Society.  He is an Accredited Professional Statistician, PStat®, and a Chartered Statistician, CStat.

Professor John Danesh is Professor of Epidemiology and Medicine and Head of the Department of Public Health and Primary Care at the University of Cambridge. Alongside his role as Research Director, he is also Director of the British Heart Foundation’s Cardiovascular Epidemiology Unit, Associate Faculty Member at the Wellcome Trust Sanger Institute, and Honorary Consultant at the Cambridge University Hospital NHS Foundation Trust.

Before receiving his MSc from the London School of Health and Tropical Medicine, he trained in medicine at the University of Otago in New Zealand and at the Royal Melbourne Hospital in Australia. His main research interests are discovery genomics and cardiovascular genetics, therapeutic target prioritisation, international vascular health, screening and risk prediction, systems genomics and blood donor health and biology.

Professor Nicky Mulder heads the Computational Biology Division at the University of Cape Town (UCT), and is a full member of the Institute of Infectious Disease and Molecular Medicine. She leads H3ABioNet, a large Pan African Bioinformatics Network of 28 institutions in 17 countries, which aims to develop bioinformatics capacity to enable genomic data analysis on the continent. H3ABioNet has developed an extensive training program for African researchers. She also co-leads a Sickle Cell Disease Data Coordinating Centre and a Wellcome Trust Centre Data Integration Platform at UCT.

She received her PhD in Medical Microbiology from the University of Cape Town and then worked for 8.5 years at the European Bioinformatics Institute in Cambridge, as a Team Leader.

At UCT her research focuses on genetic determinants of susceptibility to disease, African genome variation, and microbial genomics and infectious diseases from both the host and pathogen perspectives. Her group provides bioinformatics services and training and develops new algorithms and resources for the analysis of complex African genetic data.  Prof Mulder is actively involved in capacity development, including training, education and curriculum development in Bioinformatics.  She also sits on a number of international scientific advisory boards.

Professor Steve Webb MBBS, MPH, PhD, FRACP, FCICM, FAAHMS

Dr Steve Webb is an ICU specialist at Royal Perth Hospital, a Professor of Critical Care Research at Monash University, and Deputy Chair of the Australian Clinical Trials Alliance.  He designs and conducts clinical trials that generate evidence to improve patient care. He is named as an investigator on more than $115 million in research funding, has been an investigator on trials with an accumulated sample size of more than 50,000 patients, and has published more than 180 manuscripts including in the NEJM (7), JAMA (5), and The Lancet (2). He has particular experience with Bayesian adaptive platform trials and other innovative designs such as cluster cross-over trials.

Wang Yu, MD, PhD, is the distinguished Professor of Wanke School of Public Health, Tsinghua University.  He served as Director General of the Chinese Center for Disease Control and Prevention for 13 years (2004-2017).  He is the president of the Chinese Foundation for Hepatitis Prevention and Control.

In the academic field, Dr Wang Yu was dedicated to research on hepatitis viruses and hepatology.  He did research and clinical practice in People’s Hospital, and became the director of the Institute of Hepatology, Peking Medical University. Later he was appointed vice president of Peking Medical University.  He then transferred to the Ministry of Science and Technology as the deputy director of China National Center for Biotechnology Development (CNCBD).

Wang Yu participated in the response to the SARS outbreak, and led the national response to emerging infectious diseases and public health emergencies, such as the H1N1 Flu pandemic and the Wenchuan post-earthquake disease prevention.  He led and promoted a national disease surveillance system initiative for investigation and intervention in areas with higher cancer prevalence. Internationally, he led and participated in the response to the Ebola outbreak in West Africa and was actively involved in the initiative of the public health system strengthening in Africa.  Dr Wang Yu was invited to join the CEO Roundtable on Cancer in 2016, and currently serves as the president of Shanghai TuoXin Health Promotion Center, which is a Shanghai based non-profit focused on chronic disease prevention and education in workplace.

Dr Wang is on the Executive Board of the Chinese Medical Association. Internationally, he serves as the member of the WHO Regional Commission for the Certification of Poliomyelitis Eradication in the Western Pacific.

Gail Stephens is the executive champion of Health Care and Life Sciences at SAS, with a passion for helping customers harness data’s hidden intelligence to make the world a better place. She heads Research and Development (R&D), product management/strategy, industry consulting as well as philanthropic efforts in this industry.  She consults with customers on data-driven initiatives, and evangelizes how SAS software delivers insights that transform organizations.

A principal responsibility is Project Data Sphere, the groundbreaking collaboration between researchers and SAS that makes historical clinical trial data and analytics broadly accessible to those seeking to advance cancer treatment research. Using a first-of-its-kind platform, the project integrates SAS Health and Life Sciences, machine learning and AI as well as Business Intelligence (BI) software.

Leading collaborative teams that deliver quality software has been Stephens’s mission for 35 years at SAS. In previous roles, she developed graphical user interfaces (GUIs) and managed teams that developed some of the earliest GUIs at SAS. She also spent many years guiding the overall BI R&D efforts at SAS, an experience that provided unique insights into streamlining BI software within the Health Care and Life Sciences projects she oversees today.

A North Carolina native, Stephens graduated from North Carolina State University with a bachelor’s degree in computer science. She also served on the Strategic Advisory Board for the computer science department. In addition, she has served on the executive board of North Carolina Healthcare Information and Communications Alliance.

Professor Liang Wannian, PhD, is the incumbent vice dean of the Vanke School of Public Health, Tsinghua University, and the leader of the National Health Commission’s COVID-19 Response & Reaction Expert Group.

From the dean of Teaching & Research Section of Sociological Medicine & Health Management to the vice president of the Capital Medical University (1997–2003), and from the deputy chief of the Beijing Municipal Health Bureau to the Minister of the Institution Reform Department of the National Health Commission (2003–2020), Liang held increasingly important positions both in the university and municipal/state functions. Liang played a central role in the national fight against both SARS and COVID-19, and gained rich practical experience in dealing with the pandemic situation.

Liang was awarded Outstanding Mid-Career Expert by the Ministry of Human Resources & Social Security of the People’s Republic of China in 1992, Municipal Outstanding Individual in Prevention of SARS by the United Group for SARS Prevention of Beijing in 2003, Honorary Title of the National Outstanding Science & Technology Worker by the China Association for Science & Technology, and another seven primary awards, along with ten technology awards.

Liang completed his MD at the Anhui Medical University and his PhD at Peking Union Medical College. He specialized in the fields of epidemiology, health statistics, health emergency management and general medicine. He has published 24 English papers in SCI and 480 Chinese papers and 46 textbooks and academic monographs as editor-in-chief.

Ethics Advisory Council

The Ethics Advisory Council provided high-level advice on ethics and data governance, helping us to build and demonstrate trustworthiness across all our activities.

• Effy Vayena (Chair) Chair of Bioethics, at the Swiss Institute of Technology (ETHZ)
• Pamela Andana Wits University, South Africa
• Claudia Emerson McMaster University, Canada, Director, Institute on Ethics & Policy for Innovation
• Sharon Kaur University of Malaysia  
• Katherine Littler Co-Lead, Global Health Ethics & Governance Unit, World Health Organization
• Graeme Laurie , Professor of Medical Jurisprudence, University of Edinburgh
• Elettra Ronchi Senior Policy Analyst, OECD

Aligned with ICODA’s commitment to transparency, the Ethics Advisory Council’s Terms of Reference and meeting summaries are publicly available.

The Ethics Advisory Council has provided advice on the development of our Ethics and Governance Framework , and acted as an independent guardian of the Framework.

Effy Vayena

Professor Effy Vayena is Chair of Bioethics, at the Swiss Institute of Technology (ETHZ) and renowned expert at the intersection of medicine, data, and ethics.  Her work focuses on important societal issues of data and technology as they relate to scientific progress and how it is or should be applied to public and personal health.

A keen interest in health policy has led her to work with the World Health Organization on ethical questions around reproductive medicine and research.  Upon her return to academia, Vayena helped establish and coordinated the PhD program in Biomedical Ethics and Law at University of Zurich and was subsequently awarded a professorship by the Swiss National Science Foundation.Effy Vayena believes in the value of interdisciplinarity and the application of practical knowledge to investigate ethical questions of personalised health.  Her widely recognised research has allowed her to collaborate and build strong relationships with a variety of scholars in Switzerland and from renowned institutions abroad.

Vayena is a leading expert in the dynamic and diverse field of health data and ethics, successfully leveraging her international network to promote a fruitful debate about the ethics of health in the digital age. She has previously worked with the Wellcome Trust, OECD, Commonwealth Fund, Chatham House, and academic institutions and governments around the world.  She was born in Greece and studied medicine history, public health and bioethics at universities in Athens, London, Minnesota and Harvard. From 2000-2007 she worked as a technical manager for the WHO in the field of reproductive medicine and ethics.  Since 2007 she has been a research associate and coordinator of the PhD program in biomedical ethics and law at the University of Zurich.  She is researching, among others, the ethics of personalized medicine, the moral question of genetic testing, and the ethical challenges of using Big Data within health research and clinical practice.

Statistical Expert Group

The Statistical Expert Group (SEG) promoted and facilitated responsible sharing of data, use of analytical methods and tools, and high quality results to support dissemination of knowledge worldwide.

• Jonas Häggström (chair) VP Global Health, Cytel
• Frank Rockhold Professor of Biostatistics and Bioinformatics, Duke Clinical Research Institute
• Amy Racine Distinguish Scientist, Novartis
• Joan Buenconsejo Senior Director, Biostatistics, AstraZeneca
• Maia Leskovsky Associate Professor, University of Cape Town
• Ling Wang Executive Director Biostatistics, Pfizer
• John Norrie Chair of Medical Statistics and Trial Methodology, Director, Edinburgh Clinical Trials Unit (ECTU)
• Peter Mesenbrink  Executive Director Biostatistics, Novartis
• Estelle Russek-Cohen Senior Advisor Office of Biostatistics, CDER
• Robin Mogg Clinical Biostatistics Leader – Bill & Melinda Gates Medical Research Institute

“There is this underlying tenet that everything we do is based on equality, collaboration, and open access to data and information. So, it was obvious for the Minderoo Foundation to understand the context of this initiative. We were impressed by the partners involved on the funder side and with HDR UK as the convener, so it seemed appropriate to support this Alliance.”

Steve Burnell

Minderoo Foundation

ICODA was convened by Health Data Research UK – the national institute for health data in the UK. It was supported by a grant from the COVID-19 Therapeutics Accelerator , a large-scale initiative initiated by the Bill & Melinda Gates Foundation , Wellcome , Mastercard with additional support from Minderoo Foundation , and other donors to speed the development of and access to therapies for COVID-19.  Other funders to the International COVID-19 Alliance included Microsoft, through its AI for Health program:

Bill and Melinda Gates Foundation

Chan Zuckerberg Initiative

Microsoft AI for Health

ICODA provided the opportunity to make a real difference to harness the power of health data to help tackle the COVID-19 pandemic.  ICODA was a rapidly-convened initiative and an ambitious and dynamic global programme.

We were a diverse group of experts working together, based on a set of united principles and a “One Institute” approach, a collaborative culture inherited from our convenor, Health Data Research UK.

ICODA is completing its activities in October 2022.  Further job opportunities in HDR Global as they arise will be posted on HDR UK’s website in the jobs section .

Alternatively, please contact us .

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Population and Health Data Science: Fully Funded Health Data Research UK PhD Scholarship: Use of Real-World Evidence in Health Technology Assessment for Multiple Long-term Conditions (RS600)

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Closing date: 12 May 2024

Key Information

Funding provider:   Health Data Research (HDR) UK

Subject areas:   Population Data Science

Project start date:

• 1  October 202 4 ( Enrolment open from mid-September )

Project supervisors:

• Professor Rhiannon Owen ( r.k.owen @swansea.ac.uk )
• Dr James Rafferty
• Professor Hamish Laing
• Professor Keith Abrams (University of Warwick)

Aligned programme of study: PhD in Population and Health Data Science

Mode of study: Full-time

Project description:

Healthcare decision-making has previously focussed on developing recommendations for single conditions. However, standardised care for each chronic condition in isolation can be inappropriate for individuals living with multiple long-term conditions known as multimorbidity, and may lead to unnecessary polypharmacy. This PhD studentship aims to develop a modelling framework to estimate the natural history of disease in individuals living with multiple long-term conditions using population-scale, linked, electronic health records from the Secure Anonymised Information Linkage (SAIL) Databank Wales Multimorbidity e-Cohort ( Lyons et al , 2021 ). This approach will allow estimation of the potential adverse effects (such as hospitalisations) of drug-on-drug interactions for the treatment of multiple conditions and associated genetic, environmental, or demographic risk factors. Further this PhD project will compare the efficacy of different combinations of treatments used in people with multiple long-term conditions, and assess potential health inequalities.   

Facilities 

The PhD student will be based in Population Data Science at Swansea University with visiting PhD Student Status at the Department of Statistics at the University of Warwick, benefiting from the stimulating and supportive environment and bespoke training programmes. The successful candidate will receive training to develop their knowledge and expertise in statistical modelling, epidemiology, population data science and health technology assessment, with the opportunity for their research to directly inform healthcare policy and practice. The successful student will have the opportunity to present their work at national and international conferences and workshops.  

This PhD is funded as part of the HDR UK Medicines in Acute and Chronic Care Driver Programme, which is a national collaboration that aims to understand and transform the use of medicines for patient benefit, and reduce medicines-associated harm. The Driver Programme has a particular focus on vulnerable populations including people living with multiple long-term conditions and those experiencing health inequalities. The successful candidate will be one of several PhD students contributing to the wider HDR UK Driver Programmes and will have the opportunity to collaborate with the wider HDR UK Driver Programme Team as well as access additional training and associated events hosted by HDR UK. 

Eligibility

Candidates must hold an Upper Second Class (2.1) honours degree. Candidates  will need an MSc in Statistics/Biostatistics or Epidemiology/Health Data Science (with a strong analytical component ) plus programming and data analysis skills/experience in R and/or Python.  

Experience of analysing large-scale linked electronic health record data and k nowledge of Bayesian methods would be an advantage.

If you are eligible to apply for the scholarship but do not hold a UK degree, you can check our comparison entry requirements (see  country specific qualifications ). Please note that you may need to provide evidence of your English Language proficiency. 

This scholarship is open to candidates of any nationality.

If you have any questions regarding your academic or fee eligibility based on the above, please email  [email protected]  with the web-link to the scholarship(s) you are interested in. 

This scholarship covers the full cost of tuition fees and an annual stipend of £ 19,237.

Additional research expenses will also be available.

How to Apply

To apply, please  complete your application online   with the following information:

In the event you have already applied for the above programme previously, the application system may issue a warning notice and prevent application, in this event, please email [email protected] where staff will be happy to assist you in submitting your application.

• Start year  – please select  2024
• Funding (page 8)  –
• ‘Are you funding your studies yourself?’ – please select  No
• ‘Name of Individual or organisation providing funds for study’ – please enter  ‘RS600 - Health Technology Assessment'

*It is the responsibility of the applicant to list the above information accurately when applying, please note that applications received without the above information listed will not be considered for the scholarship award.

One application is required per individual Swansea University led research scholarship award ; applications cannot be considered listing multiple Swansea University led research scholarship awards.

We encourage you to complete the following to support our commitment to providing an environment free of discrimination and celebrating diversity at Swansea University: 

• Equality, Diversity and Inclusion (EDI) Monitoring Form  (online form)  

As part of your online application, you MUST upload the following documents (please do not send these via e-mail).  We strongly advise you to provide the listed supporting documents by the advertised application closing date.  Please note that your application may not be considered without the documents listed:

• Degree certificates and transcripts  (if you are currently studying for a degree, screenshots of your grades to date are sufficient)
• A cover letter  including a ‘Supplementary Personal Statement’ to explain why the position particularly matches your skills and experience and how you choose to develop the project.
• Two references  (academic or previous employer) on headed paper or using the  Swansea University reference form . Please note that we are not able to accept references received citing private email accounts, e.g. Hotmail. Referees should cite their employment email address for verification of reference.
• Evidence of meeting  English Language requirement  (if applicable).
• Copy of  UK resident visa  (if applicable)
• C onfirmation of EDI form submission (optional)

Informal enquiries are welcome, please contact Professor  Rhiannon Owen  ( r.k.owen @swansea.ac.uk ).

*External Partner Application Data Sharing  – Please note that as part of the scholarship application selection process, application data sharing may occur with external partners outside of the University, when joint/co- funding of a scholarship project is applicable.

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• Health and social care
• Research and innovation in health and social care
• Extreme cold temperatures in domiciliary care
• UK Health Security Agency

Extreme cold temperatures in domiciliary care: executive summary

Published 25 April 2024

© Crown copyright 2024

This publication is licensed under the terms of the Open Government Licence v3.0 except where otherwise stated. To view this licence, visit nationalarchives.gov.uk/doc/open-government-licence/version/3 or write to the Information Policy Team, The National Archives, Kew, London TW9 4DU, or email: [email protected] .

Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned.

This publication is available at https://www.gov.uk/government/publications/extreme-cold-temperatures-in-domiciliary-care/extreme-cold-temperatures-in-domiciliary-care-executive-summary

Background to the research

In the UK mortality is significantly higher during the winter months (December to March) than in other seasons. On average there are around 35,000 excess winter deaths ( EWDs ) each year in England and Wales. Excess mortality attributed to cold is significantly higher than that attributed to heat, and cold-related mortality is a considerable health burden, particularly in deprived areas. There is also an appreciable increase in risk of mortality during extreme cold for people aged 65 and over across a range of studies and settings. People with long-term conditions (more common among the ‘oldest old’) are also more vulnerable ( 1 ).

While the focus of this research was on people receiving care, carers themselves are also at risk during periods of cold weather alerts. So the aim of this study was to explore both the client and care worker risks as well as general preparedness for cold weather, with a view to identifying mitigations and incorporating these into advice and cold weather planning.

Methodology

The UK Health Security Agency ( UKHSA ) commissioned Discovery Research, an independent research agency, to carry out this study to understand the attitudes and actions of social care practitioners working in domiciliary care during winter months as well as their experiences of planning for cold weather. A qualitative approach was used to explore the research objectives.

Key findings

Risk perceptions of cold weather.

Domiciliary carers had an accurate idea of what to look out for and understood what actions they should be taking to support the health needs of their clients. They identified where some adults receiving care were at more risk from the cold than others and these considerations were built into their preparations.

Planning and preparedness for cold weather

While preparations for cold weather were commonplace, the extent to which plans were formalised as opposed to carers carrying out behaviours they felt were ‘common sense’ was variable. Larger care organisations had more formal plans than the smaller organisations.

Impact of sudden cold weather

Dealing with the impacts of sudden cold weather was a key issue facing the sector. Enabling the safe and efficient transport of carers to clients’ homes in the context of disruption to travel routes was a particular challenge. Activating full community support involving local authorities, a network of care organisations in the area and local charities was felt to be the best course of action to ensure all clients were seen but this was not happening consistently across local authorities.

Impact of increased energy cost

The cost of energy was a particular issue in the winter of 2022 to 2023. Some clients turned their heating down or off, so risking their health, while others left it on continuously, so risking getting into financial hardship. Carers also found this situation difficult to manage and were unsure whether they could or should intervene. They were also keen to ensure they knew how clients could take advantage of the financial support available to them.

Wellbeing and vulnerability

Poor mental health and feelings of isolation were a concern for many clients, particularly during prolonged periods of cold. Some domiciliary carers also felt isolated and unsupported over the course of the winter months and did not feel their personal needs were always considered by their employer.

Information needs

The research identified 3 areas in which information could be improved for domiciliary carers:

1. More tailored and practical formal guidance from UKHSA .

2. Information to enable consistent coordination and communication within agencies and local authorities.

3. Greater clarity about what information to provide to clients to ensure they are getting all the support available.

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New £10.4 million research centre will unlock new tests, treatments and cures for people living with rare kidney diseases

Professor Jonathan Barratt

Thousands of people living with rare kidney disease will have access to improved diagnostics, treatments and potentially cures, thanks to the creation of a new research centre, involving experts from the University of Leicester.

It follows a major report from Kidney Research UK which showed that kidney failure could overwhelm the health care system within ten years.

The LifeArc-Kidney Research UK Centre for Rare Kidney Diseases will provide urgent focus and resource, uniting researchers, patients and healthcare professionals and building on strong established resources, including the national registry of rare kidney diseases (RaDaR), the national renal sample biobank (NURTuRE) and care guidelines. 

It signals the start of a transformation in all 13 of the UK’s children’s kidney centres to embed a culture of research by connecting the systems to accelerate discoveries and advance the treatment of rare kidney diseases.

Medical research charity, LifeArc, has invested £9.4 million into the new translational centre, with a further £1 million contribution from Kidney Research UK to support work over the next five years. 

It will be led by Dr Louise Oni, Senior Lecturer in Paediatric Nephrology at the University of Liverpool and honorary consultant paediatric nephrologist at Alder Hey Children’s Hospital.

Professor Jonathan Barratt leads the Renal Research Group within the University of Leicester. His research is focused on a bench to bedside approach to improving understanding of the pathogenesis of IgA nephropathy – a common global cause of kidney failure. As such he will be heavily involved in the new centre and said: “It will offer a transformative approach to the study and care of children with rare kidney diseases.

“Having worked with Louise to help develop the LifeArc proposal it is clear to me that this programme of work has the potential to transform how adult and paediatric nephrologists work together to find cures for rare kidney diseases. 

“LifeArc will leverage the 25 years plus expertise we have in Leicester in the study of IgAN and IgA vasculitis, two rare causes of kidney disease that affect both adults and children, and will utilise the cutting-edge technologies we have available in The Mayer IgA Nephropathy Laboratories to study changes at the molecular level in the kidneys of children with these diseases.” 

Dr Louise Oni said: “This UK wide project aims to create a culture of constant learning to bring rapid advances to patients of all ages living with kidney diseases. It will start by focusing on children with rare kidney diseases to attempt to halt the journey to kidney failure and then upscale into adult patients. Through collaboration, the templates presented by these rare disease centres will support mass transformation to benefit many other patients.”

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Centre for Academic Primary Care

New centre for applied excellence in skin and allergy research.

CAESAR Team (from left): Dr Phuong Hua, Dr Andrew Turner, Dr Roxanne Parslow, Professor Matt Ridd, Dr Raquel Granell, Catriona Rutter.

25 April 2024

The University of Bristol is home to a new Centre for Applied Excellence in Skin and Allergy Research (CAESAR), which has been established to improve the diagnosis and treatment of common skin and allergy problems in primary care.

Directed by Matthew Ridd , GP and Professor of Primary Health Care at the Centre for Academic Primary Care , it comprises a multi-disciplinary group of 20 people with a focus on childhood eczema and food allergy.

Professor Ridd and CAESAR are supported by a National Institute for Health and Care Research (NIHR) Research Professorship award to build capacity and accelerate progress in answering questions of importance to patients with skin and/or allergy problems.

The majority of people with skin and allergy conditions are looked after by their GP. However, there are many uncertainties about how best to look after even common problems. For example, the main treatments for eczema are moisturisers (emollients) and flare control creams (topical corticosteroids). These have been around for decades, yet we still don’t how to use them together optimally or indeed how to support carers and patients with eczema to look after their skin.

During its first five years, CAESAR will work on the Transforming Outcomes for Paediatric Allergy in Primary Care (TOPIC) programme. Underpinned by strong public, patient and stakeholder involvement, supporting equality, diversity and inclusion, it will address the following research questions:

• What are the most effective and safe ways to use emollients and topical corticosteroids to treat children with eczema in primary care?
• Does an eczema clinic in primary care improve disease control in children?
• What are the priorities for food allergy research in children?
• What awareness is there of early allergen introduction advice, is it being followed and is it preventing food allergy?

The NIHR Research Professorships scheme funds and supports research leaders of the future to improve the health and wealth of the nation through research. It also aims to strengthen and benefit health, public health and care research leadership at the highest academic levels.

CAESAR sits within the Centre for Academic Primary Care , NIHR School for Primary Care Research (SPCR), University of Bristol. It works closely with the Bristol Trials Centre and builds on existing studies ( TIGER , ATHENA ) and collaborations. The centre also hosts the Society for Academic Primary Care (SAPC) and NIHR SPCR Skin and Allergy specialist interest groups.

Dr Andrew Turner , Research Manager of CAESAR, said: “We’re thrilled to launch CAESAR and our ambitious plans to accelerate progress in answering common, practical questions in primary care. With a commitment to excellence, our Centre endeavours to make a lasting impact, driving positive change in our community and beyond.”

Professor Matthew Ridd, GP and Director of CAESAR, said: “I’m delighted to have been given this opportunity to set up the Centre and lead much-needed research to address the needs of patients, carers and the NHS in this area.”

For more information, visit the CAESAR website .

Further information

About the national institute for health and care research.

The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:

 Funding high quality, timely research that benefits the NHS, public health and social care;

• Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
• Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
• Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
• Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
• Funding applied global health research and training to meet the needs of the poorest people in low- and middle-income countries.

 NIHR is funded by the Department of Health and Social Care. Its work in low- and middle-income countries is principally funded through UK Aid from the UK government.

The NIHR is the research partner of the NHS, public health and social care.

About the Centre for Academic Primary Care

The  Centre for Academic Primary Care  (CAPC) at the University of Bristol is a leading centre for primary care research in the UK, one of nine forming the NIHR School for Primary Care Research. It sits within Bristol Medical School, an internationally recognised centre of excellence for population health research and teaching. Follow on X:  @capcbristol  and on  LinkedIn .

Institute of Epidemiology & Health Care

ICLS young carers research presented to DWP

25 April 2024

ICLS' Rebecca Lacey gives evidence to DWP Select Committee on Young Carers and Carers Allowance

Evidence from ICLS research on young carers has been presented to members of the Department for Work and Pensions Select Committee this week, with calls . 

Dr Rebecca Lacey joined Andy McGowan, Policy and Practice Manager at the Carers Trust and Alek-Zander Chullan-Hoyte, who has been caring for his mother who suffers with a spinal condition and other issues since the age of 12. 

Rebecca, a Reader in Social and Lifecourse Epidemiology at St George's University London told the inquiry:

We hear time and time again that what it takes for a young carer to be identified is a crisis or a series of crises if it happens at all. We are really hampered by a lack of societal awareness about just how many young people this is affecting. Our research shows that this figure is actually 12 per cent, which equates to around 1.1 million children across the UK.

Rebecca, who is leading a research project funded by the Nuffield Foundation examining the long-term effects of being a young carer, added that early findings indicated that young people's mental health and wellbeing were impacted very soon after taking on caring responsibilities. This, she explained, pointed again to the need for early identification of young carers in order to support them and help alleviate the burden of care.

Andy McGown of the Carers Trust, who are working with the ICLS team on the research, told the inquiry that early research showed that it took an average of 3 years before a young person was identified as a young carer. In one case they found someone who started caring at the age of 6 and was only identified as a carer aged 16. 

Andy called for greater awareness in schools, colleges, universities and training providers but also among employers with a greater emphasis on identifying young people with caring responsibilities moving into work for the first time. He went on to say that many young carers were also trying to follow intense programmes of study and holding down multiple part-time jobs, which was impacting heavily on their mental health.

He added that Carers Allowance had not changed to reflect the changing landscape of education and education policy and practices. Rebecca agreed adding that the current Carers Allowance created an unlevel playing field:

No young person should have to choose between financial support and getting an education and it's really important that we intervene to break the cycle of our young carers today becoming the 'cared for' of the future.

Both Andy and Rebecca called for more Cross-Government thinking and strategy to support young carers.

Speaking after giving evidence, Rebecca commented:

The Government needs to do so much more to support young carers and ensure they have equality of opportunity. Our research highlights the stark inequalities that are currently experienced by young carers and their families.

• Listen to Becca, Andy and Alex give their evidence

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Africa Finance Corp. will join a group of companies developing a project to produce solar and wind power in Morocco and transmit it to the UK via undersea cables, Chief Executive Officer Samaila Zubairu said.

The project includes 10.5 gigawatts of solar and wind power, and batteries to store nearly half that capacity. It will also involve laying 3,800 kilometers of cables below the ocean. The plan expected to cost more than $20 billion will be one of the biggest energy investments Africa’s yet seen.

“There has to be a clear understanding that Africa is no longer charity or an ...

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